Poster presented by Kate LeMay to the NHMRC Research Translation Symposium in Sydney on 27-28 November 2018

1. Research data management
and sharing of medical data
The ARDC is supported by the Australian Government through the National Collaborative Research Infrastructure Strategy Program
Kate LeMay Senior Research Data Specialist
Australian Research Data Commons (ARDC)
kate.lemay@ardc.edu.au
With the exception of third party images or where otherwise indicated, this work is licensed under the
Creative Commons Attribution 4.0 International Licence.
Why manage and share health and medical research data?
ARDC helps with data management and sharing!
Many international funders are
mandating data management and
sharing as a condition of their
funding
NHMRC and ARC
strongly support data
management and
sharing
Open access policies
Australian Code for the Responsible
Conduct of Research (updated 2018)
National Statement on Ethical
Conduct in Human Research
(updated 2018)
HREA being updated to be in
line with new requirements
Data management statement
required for ARC national
competitive grants
R22 Retain clear, accurate,
secure and complete
records of all research
including research data and
primary materials. Where
possible and appropriate,
allow access and reference
to these by interested
parties.
3.1.45 For all research, researchers should develop a data management plan that addresses
their intentions related to generation, collection, access, use, analysis, disclosure, storage,
retention, disposal, sharing and re-use of data and information, the risks associated with
these activities and any strategies for minimising those risks.
3.1.50 In the absence of justifiable ethical reasons (such as respect for cultural ownership or
unmanageable risks to the privacy of research participants) and to promote access to the
benefits of research, researchers should collect and store data or information generated by
research projects in such a way that they can be used in future research projects. Where a
researcher believes there are valid reasons for not making data or information accessible,
this must be justified.
Advantages to
researchers
Maximises value of
investment in research
Datasets deposited in a
repository can get a DOI
like papers
Citations can be counted
towards academic recordMore exposure for your
research (findable)
More collaborations
Papers with shared data are
cited more often (Piwowar, Day,
& Fridsma. PLoS ONE.
2007;2[3]:e308)
Secure ongoing
storage for data
Avoid data loss
Data retention is required
for defence of research
(research integrity)
Increases transparency and
reproducibility of research
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Entire FAIR resources graphic is licensed under a Creative Commons
Attribution 4.0 International License
The management, retention, and appropriate sharing of research data is a key step in improving the integrity, value and reproducibility of research.
10 Medical and
Health Things is
an online self-
directed
learning
program
focusing on
management
and sharing of
medical data
The Publishing
and Sharing
Sensitive Data
Guide walks
researchers
through things
they need to
consider when
sharing
medical data
F.A.I.R training
resources
ands.org.au/medical
ICMJE, NEJM & BMJ say
there is an ethical obligation
to responsibly share data
generated by interventional
clinical trials because
participants have put
themselves at risk
Ethics
ands.org.au/working-with-data/fairdata
All ARDC resources are free
and reusable